The icare4autism conference ended this afternoon. It was a whirlwind of activity spanning 48 hours of discussions and presentations led by scientists, therapists, neuroscientists, policy makers, parents and advocates. Stephen Shore, who is Autistic, gave the single most entertaining presentation, entitled: Employment Opportunities for People with Autism: Observations on Promoting Success.
On the first day I interviewed Henry and Kamila Markram, the neuroscientists who came up with the Intense World Theory of Autism, the only theory I’ve read and heard that makes any sense and which validates my own observations of my daughter, Emma. Yesterday I spoke with Joshua Weinstein, the CEO and President of icare4autism. He seemed genuinely interested in hearing from people. He actively sought out suggestions, made himself available to anyone who approached him. He seemed sincere in his desire to bring scientists, therapists, parents, researchers, educators and advocates together.
The organization’s weakest point is in having Autistics on their advisory committee. According to the sheet I received there aren’t any, and only one Autistic person, Stephen Shore, was at the conference presenting. Perhaps after today’s conversation that will change. I hope so. I would like nothing more than to write glowingly about an organization that carries the word “autism” in it’s name. I spoke out whenever it seemed even remotely appropriate. But by the end of the conference I had made my – Autistics must be included in this organization -speech more than a dozen times. Only once was I met with any argument and interestingly enough, that one time was from a parent of a “severely autistic child” as she described him, who was furious with me for suggesting we needed to move beyond the autism = tragedy model.
There is tremendous misunderstanding surrounding labels and the designations of low, high, severe and mild. It was clear that people do not understand why these labels are unhelpful and the terms were thrown around a great deal during a number of the presentations I attended. Another huge misperception surrounds intelligence or “lack” of in Autism. I was astonished to hear the words “mental retardation” used in connection with autism during a couple of the comments from the audience. I hadn’t realized that was still thought, by many, to be synonymous with autism.
The really good news is, I heard questions surrounding the “ethics” of various treatments and interventions for Autism and I was relieved to hear a number of people talk about the abuse, mistreatment and need for greater advocacy among the Autistic population. Of course the best advocates are Autistics themselves and so I hope icare4autism will heed some of my suggestions. I was not the only one making these suggestions, by the way. There were a number of people, including Stephen Shore who was wonderfully articulate in his opinions and ideas, who brought up the need for Autistics to represent themselves and the importance of Autistics to be involved in all levels of any organization that carries the word autism in its title.
Finally, I miss Emma terribly and cannot WAIT to see her this afternoon.
Em in the playground
I would love to go there one day. I hope you are right about them being open to addressing the weakness in terms of autistic representation. While I technically have “right of return” not sure I would move there permanently but better care for autistic people anywhere is a good thing.
It is good that despite the lack of self-advocates the ethics issues were addressed. I tried to bring some up in a conference in Toronto once and it didn’t seem like the presenters had ever even thought about the issues. Although there was slightly better autistic representation there the actual presenters were the usual ones. (Stephen Shore, Temple Grandin and someone who’s name totally escapes me who’s central premise was that he had cured himself of autism)
While I wish my own life were easier and know if I was not autistic it likely would be. (I would still have other challenges) I also know I would not be me without it. I don’t believe you can cure a pervasive developmental disorder anyway without curing the person of being them. There are already some treatments that seem to have as an objective more of a robotic response to specific situations and the personhood of those “treated” that way is already jeopardized. I said in my dog’s blog awhile back I had concern about some specific training issue because of his rights to be the dog he is so it would be nice if that same right could be extended to all autistic people.
I am not actually against treatment. Without speech therapy my life would be more difficult. Even if my speech does flee under stress now the ability to speak fluently under ideal situations is helpful. Although speech is not the only way to achieve communication it is the one society expects.
I imagine if more in the way of social skills training were available when I was young that the bits that didn’t offend my sensibilities might have been useful.
A parent of a child with autism made me a weighted blanket years ago and that helped my insomnia to a greater degree than anything previously.
It’s getting people to stop being addicted to autism as total tragedy model. While it’s the grim depictions and sappy music that opens up the wallets it would be nice if it could shift towards the desire to see all people with autism lead the best lives they can and for that notion to tug at the pursestrings as strongly.
Gareeth, I absolutely agree. I don’t have any way of contacting you, but if you’d like, email me at firstname.lastname@example.org. I have no idea if Joshua Weinstein means to follow up on my suggestions, but if he does I’d love to give him your contact info. Just let me know.
Thank you Gareeth for being such a compelling advocate for looking on the positive side of autism. You definitely should be representing autistics at conferences. I hope that the icare4autism conference may open doors for you and all those who suffer from being misunderstood, mistreated, and misrepresented.
I absolutely agree!
Sounds like you had a wonderful experience and that you will have an even more wonderful reunion with Emma. All in all, a week well spent! 🙂
It was fascinating and it’s wonderful to be home!
Treatment of symptoms and concomitant issues is not the same thing as cure and eradication, and I am flummoxed that there is still any mixup. I have a right to want to learn ways to deal with anxiety, and my nephew had a right to learn to speak, without being not-us, or having never been born, or repeatedly hearing ourselves portrayed as horrible heartbreaking tragedies. My nephew, when non-verbal, used to put his hands over his ears and scream. Think of a time when you might do that. I am serious. We can hear the dehumanizing language even when we do not speak.
We have “helped” in relatedly terrible ways and worse in many “third world” countries. When they had famines, we took over and introduced monoculture farming, breaking the soil and killing ways of life. This drove the people further into famine and poverty, and left their life ways fragmented so they were farther from comfort– but luckily there are more demeaning television commercials about how people cannot afford to care for their children, so we can afford to keep this up.
Munchausen by “charity.” Is this what we want? Or do we want to think on the fact that ‘charity’ comes from a Latin word meaning “love” rather than “exploitation” and act accordingly? I pray we want to be loving and the other things are just accidents we have gotten too embarrassed to stop doing. It is not too late. Stop and think and cease the wrongness. Breaking ways of life is not love. Peace to all who read this.
Thanks for this comment. I know it’s really frustrating, but I realized something as I was reading A Field Guide to Earthlings: An Autistic/Asperger View of Neurotypical Behavior (that book is a MUST read for all neurotypicals! Richard’s reading it at the moment and loving it!! We NTs need to have things repeated many times in order to change deeply embedded previous notions, even if those notions are based on nothing other than a message from an advertisement. The good news is perceptions can and do change! ❤
Ariane I am so glad you are on our side. ❤ I missed you. Talk soon.
I really, really missed you too! We will talk over the weekend. ❤
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I know this post is over a year old. I am a father of a beautiful daughter who falls on the severe end of the autistic spectrum. I only recently came across the Intense World Theory of autism. I have been reading all I can about it because it says everything I have always been saying about my daughter. In all my reading this is the first time I read anything that fit so much. Thanks for your blog post.
So glad! We have also found it to be eerily close to many things our daughter is now able to verify by writing to us.
If you’re curious, my husband has been writing the occasional post on this blog, his latest was published today!